It's been a long time since I posted. I've kind of been in a depressed funk. With the weather getting colder, and not being as comfortable for outside sitting, I've spent a lot of time in my room binge watching Netflix and project runway. Not exactly my highest point.
The update is that as of October, the Brentuximab was no longer shrinking my cancer. It had done a great job getting rid of a bulk of my disease, but the places it didn't touch have started to get angry again. I have a couple of small new spots on both my lungs and my liver and the mass in my abdomen and nodes in my hip have started to get a little bigger. This threw me for a loop as I was hoping that I would be done after 6 rounds, but it seems like I'm back in the hot seat of deciding on new treatment .... Again!
It's overwhelming to have to do this over and over again. I went to Dana Farber and met again (a year and a half later) with dr Armand. This meeting didn't go as well as I hoped, but not because of the things he was telling me, but rather his tone and some choice words he used. While I was frustrated with the way the appointment went, I did get most of the information I needed to make a decision on my next step in treatment. SO here goes...
My next drug of choice is Nivolumab - a PD-1 checkpoint inhibitor that in the spring was still on trials, but is now FDA approved and available for hodgkin's patients. This drug has shown great promise in getting people into remission - and many have had durable remissions. It has not been used in hodgkin's long enough to have official "cure" data, but it is a great next step for me.
This drug also will not (likely) effect my chances at having a successful stem cell transplant in the future should I need one. As it is not a chemotherapy, it doesn't create the chemo resistance that can happen when you try chemo after chemo after chemo and keep changing those types of drugs (this is why I chose this over combining Brentuximab with Brendamustine - which is another good combo, but would be a treatment that could potentially reduce my likelyhood of getting cure from an auto transplant).
A few things that come in the future - as far as this drug goes, I'm hoping to get a complete response (CR). I am willing to stay on it for some number of doses if that response is reached. As maintinence therapy I plan on doing a few things - making sure my diet is more low carb, Tong Ren therapy with accupuncture, much more regular chiropractic care (someone remind me I need to make an appointment!), Cannabis oil in low doses, regular detox, yoga, rebounding, and mindfulness work (massage, meditation, etc). The biggest factor that will (my doctors and I believe) help to keep me in remission is that I have taken future pregnancies off the table. My original diagnosis and my relapse were both linked to my pregnancies, and there is some science that says it could be linked. Taking that off the table will hopefully keep me trigger free for relapse in the future. (Pregnancy is linked to hodgkin's with the PD-1 checkpoint - a hormone (I think it's a hormone) that is also excreted by the unborn fetus to keep safe from the mother's immune system.)
While I know that cancer is a metabolic disease, and not a true immune disorder, the immune system plays a vital role in helping the body clear widespread disease. This is my hope for Nivolumab for me - to clear my of my widespread disease, while I work to restore my metabolism. (If anyone wants to come over and put my rebounding trampoline together, I wouldn't object 😀.
Timeline: Because of the holidays, and trying to avoid the chaotic schedule that will happen at the hospital next week, I am starting Nivolumab TOMORROW (Thursday) afternoon. Since my last dose of anything was in the middle of October, I'm feeling good about getting going on the next step. My oncologist and my clinic nurses are very familiar with this drug, as it has been approved for other cancers for years, and have had hundreds of patients on this before, so it will be an easier first day (at least for them) than my first day of Brent. I'm glad I get to see my nurses tomorrow and I'm keeping my fingers crossed for minimal side effects and fast acting cancer killing!
Big question: how am I feeling? I feel pretty good - for sure better than I felt in July when I started the Brent. The only thing that is really bothering me is my hip and lower back. There is a node in my hip that pushes against an old hip flexor injury that is all scar tissue, so any little irritation causes pain. I am managing with just Tylenol and the occasional alieve, which is good. I hate taking pain meds, but right now I need to be able to at least sleep and function semi normally during the day.
With this new drug, we are not sure what my needs will be. We should know more over the next few days. If anyone wants to bring meals, I can reopen the meal train dates. That is always a huge help for us. If anyone wants to start taking L on Thursday mornings for us, that would be helpful as well. Lastly, for those who have supported us already, thank you so much. We greatly appreciate it. If you are able to donate, or know someone who may be able to donate, please share and click the button in the upper right of this blog. Unfortunately we are still not out of the woods financially (although we have had some amazing help from some amazing donors and organizations - THANK YOU!), and every dollar helps.
Best to all those in this fight with me - I know it has been a long and hard road. Hopefully it can be less chaotic soon.